Highlights of Our Pediatric Palliative Care Research

A selection of research highlights from PedPalNET and PedPalASCNET, organized by themes:

PAIN

It is difficult to assess pain experiences in non-verbal children.

There is not a standardized approach to treatment of pain in children with severe neurologic conditions.

There may be markers in the blood (“biomarkers”) that will help distinguish different sources of pain.

We need to learn more about the medications given to children to treat their symptoms. Innovation in the kinds of medications we use, and getting better information about their side effects, is important.

Personal resources such as meaning, optimism, and self-esteem are correlated with growth.

Parent caregivers who report more spirituality demonstrate more personal growth.

The high response rate and successful recruitment, as well as the request for participation by bereaved families show that there is a strong willingness of families in pediatric palliative care to participate in research.

BEST PRACTICES

When a child is seriously ill or dying, family relationships and exchanges with health care professionals (HCPs, including nurses, physicians, and social workers) clearly influence parent satisfaction with care and its outcomes.

When relationships are good and interactions are “human”, parents carry memories that are healing; conversely, when relationships are not good or interactions do not go well, parents carry memories of unnecessary additional suffering.

ADOLESCENT TRANSITIONS

Developments in knowledge and technology enable children with life-threatening conditions to live into adulthood with approximately 90% of children with special healthcare needs living beyond 20 years of age

Pediatric and adult care differs significantly, and negative consequences can result from poor transition from pediatric to adult care

The top 5 research questions in Adolescent Healthcare Transitions as identified by a Delphi of Canadian researchers and clinicians are:

What are the experiences of young people and parents during the transition between the child and adolescent healthcare delivery system and the adult one?

Are there supporters, skills, and/or knowledge which are identified by young adults, parents and health care providers as being critical to enhancing transition experiences?

What do young people, parents and health care providers identify as hindering the transition between the child and adolescent healthcare delivery system and the adult one?

What are the differences between disease categories regarding what participants identify as enhancing the transition between the child and adolescent health care delivery system and the adult one?

What are the differences between disease categories regarding what participants identify as hindering the transition between the child and adolescent healthcare delivery system and the adult one?

LONGITUDINAL STUDY & FAMILY EXPERIENCES

When a child is sick, it impacts on the family (parents and siblings) and the impact may extend over time, from diagnosis through bereavement.

Symptoms change over time; it is important for families and clinicians to have more information about how troubling symptoms evolve. This is especially true for rare metabolic, neurological and chromosome conditions, about which we do not know very much.

Children with progressive conditions undergo a large number of procedures, take many medications, and are often in hospital, especially intensive care.

The trajectory for children, even those with life-threatening conditions referred to palliative care, is difficult to predict.